Evolution of Emily's hemangioma (some graphic pics belows)

As  I was getting Emily ready for bed tonight, I couldn't help but look at her scar from her hemangioma and think how far she has come after that terrible, painful period of several months.  For anyone that doesn't know, Emily was born with a hemangioma.  A hemangioma is an abnormal buildup of blood vessels in the skin.  We noticed a small, pink quarter-sized mark on her upper right shoulder when she was born.  We figured that it was just a birthmark, something that was just cosmetic and not that big of a deal.

Little did we know what was in store for little Emily.  When she was about 3-4 months old, the hemangioma grew.  And grew and grew some more.  And the fact that it was growing wasn't really the problem.  Normally hemangiomas grow fairly quickly, recede and then fade over several years.  The hemangioma itself doesn't usually pose a problem unless it is in an airway, blocks vision, or in a place that it causes irritation. 

The problem with Emily's hemagioma was the ulcerations.  Ulcerations are basically areas of the skin covering the hemangioma that have broken down because the hemangioma was growing faster than the skin could accommodate.  When the ulcerations first began, we didn't know what they were.  They just looked like little scabs.  We put Aquophor and antiobiotic cream on them.

Then I started to join hemangioma message boards and read more about ulcerations.  Ulcerations are extremely bad.  If not treated early, they can lead to infection, scarring, major skin breakdown.  After reading all of this information, I found a doctor (Dr. Fred Grimmer) at Primary Children's Medical Center who specialized in vascular anomalies (malformations of blood vessels like Emily's).  I quickly made an appointment. 

Well, after our first appointment with this wonderful young doctor, we discovered that he was actually an ENT doctor that specialized in hemangiomas in the ears, nose, and throat.  He wouldn't be the one primarily treating Emily's hemangioma but he do did several things....   1. Gave us silver nitrate cream to put on the ulcerations (supposed to start helping).  2.  Took pictures to take to the Vascular Anomalies Monthly Conference (of which he is a member of) at PCMC.  3.  Was going to talk to the Dr. Vanderhooft, who was the head of the Vascular Anomalies Team.

My sweet baby...  You can see the large hemangioma with the two scabs on it

The two scabs can be very clearly seen here.  They weren't horribly painful at this point.

This is how far off the hemaniogma stuck off of her back/shoulder.

 So we went to see Dr. Vanderhooft.  Some treatments that came into consideration were laser treatments, oral steroids, steroid injections, many creams and topical treatments.  

First we did the Biofene creme.  This was a special creme that the pharmacy had to order in - seems like it was about $75 and came from France.  Didn't even touch the ulcerations.

Next came steroid injections.  These were a series of injections directly into the hemangioma.  And I am just going to say it - these were hell.  Hell for us, hell for her.  They hurt terribly while they were being done, and made her uncontrollably nasty, mean, grumpy, for hours.  The hemangioma shrunk a little bit but the ulcerations were still there.

We also did a creme call Regranex.  Let me say - this stuff was UNBELIEVABLE.  It is human growth factor in a bottle.  It was a tough choice for us to use this.  There is a possible risk of increased risk of cancer in the future.  And the bottle (size of a tube of toothpaste) was $1000!!!!  Luckily our cost after special insurance approval was $100. I think the following picture was during the Regranex treatment:

The ulcerations had grown pretty large at this point.  We had to keep them covered with a clear dressing after putting on the Regranex.

We also did two laser treatments at the University of Utah.  Again - did not improve the ulcerations and cost a fortune even after the special insurance approval.

I need to say that during all this time, we continued to see our local pediatrician, Dr. Jim Gould.  He was my sounding board, my shoulder to cry on.  I was so frustrated with our lack of progress with the head of the vascular anomalies team and her treatment thus far.  And now, her wounds were opened, smelling bad, and oozing bad colored fluid.  Dr. Gould cultured it and found it to be Pseudomonas.  Pseudomonas can only be treated with one oral antibiotic in children (and even then it's a little controversial) - the other antibiotic is IV. 

We decided to start with the oral antibiotic.  She finished one course and immediately the infection was back.  The time it was pseudomonas (resistant to oral antibiotics), staph, e-coli, and a couple of other nasty bugs.  Dr. Gould made the decision to send Emily to the Rapid Treatment Unit to have a PICC line placed and then we could do antibiotic treatment at home through the home health company.

Right after the PICC line placement.

This is the hemangioma at it's worst.  It was one bigger open crater of infection.

It absolutely broke my heart to look at her.

Most of the time, she did okay...

And still continued to give us her beautiful smile (with her cheeks that were huge from the steroids).

And she loved to stick her tongue out!

Finally after starting antibiotics, going to LDS hospital wound care 7-8 times and trying every kind of wound dressing/bandage/skin protectant/packing that they made (and having to numb her wound with lidocaine before every visit because even the lightest touch made her flinch), the head MD over the clinic recommended that we see the head of plastic surgery, Dr. Faizi Siddiqi, at PCMC for possible removal.

We were very lucky to get an appointment within about a week.  He walked in, took one look at her wound, and told me that it needed to be removed.  What relief that one sentence gave me!!  His next sentence was directed at me...  "How did you do this for as long as you have?"  I just started to cry...  You just do.  You do what you think is best for your child even if it exhausting, hurts, is gross and disgusting, overwhelming.  You just do because you love them.  

He took some pictures, explained surgery, that she might need a skin graft, wound vac, a drain, etc. The hospital stay would probably be 3 days and it might be a rough 3 days.  We were totally on board.  This was it - the final step.  

The surgery was scheduled for January 19th.  They kept the PICC line in (to be able to use for her antibiotics, fluids, etc.).  I think one of the worst parts of the surgery was when the anesthesiologist took her away down the hall...  All three of us were crying....(Ryan, Emily, and I).

The surgery went amazingly well.  They didn't have to do a skin graft or a wound vac and only had to place a small JP drain until we went home.

 

Not too long after surgery.  She's pretty wobby...  Has an IV in her left hand, PICC line in right arm, compression dressing around torso, JP drain coming out under shoulder.

Still has that beautiful smile even after the Morphine.

The next morning....  I asked if they would turn down the IV fluid rate.  She's a little swollen...

Love this happy baby!!

The day after getting home, compression dressing off.

how the incision looks 1 day after surgery.  It looked liked it was trying to get infected, so they marked the redness.  it's about 7 inches long and does all the way under her armpit.

Here it is a few days later - without the steristrips.

Spring 2010 - faded even more.

October 2011 - The scar has faded even more.  She has lost most of the muscle/fat below the scar but at some point they will probably address that.  Her shoulder blade is pretty much skin on bone.

Emily - Age 4 - Modern Medicine is amazing.